Faslodex Girls Thread 2014

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    AmyQ, How did it go today?

    Hey, it's not pathetic that you have not gone far from where you started out as long as it's a good place. My DH only made it 1/2 a block! My mom is in assisted living in Osseo so I drive over there every other week.


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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited October 2015

    2nd set of injections done! I freaked myself out and watched youtube videos last night about the proper way/place for the injections to be given. Bad move on my part, I slept terrible. It went pretty well today, however I don't think they are giving me the shot high enough. Who am I to tell a nurse how to give an injection!! Planning to see how it feels in comparison to the first set of injections and voice my concern if I need to. Hoping everyone else if doing well with the shots and side effects :)

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2015

    Ohmydarlin... in answer to your question, "Who am I to tell a nurse how to give an injection?..." It's your body and your life! You are the most important person in the world to question or give input if you have any doubts based on what you've read or heard. It's not surgery, and sadly, many techs probably are not trained in the proper technique because it's not a commonly used one. Absolutely speak up if you don't think it's being done right. I have and now I will only let one tech in my local onc's office give me Faslodex because I don't think the others do it as well.

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    Ohmydarlin,

    Sorry you got yourself all worried about your shots. I sometimes think it is good I can't see what is going on back there as those are some big needles! Did you have the same nurse for the 2nd set? My regular nurse seems to give the injections lower than those I have had from other nurses when I go to the cancer center. Not sure which way is better or correct. Did you see this article from page 48? (Thanks Tina)

    http://media.oncologynurseadvisor.com/documents/44...



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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited October 2015

    Thanks for the encouragement, ladies! I will take a look at the article link. I receive care at 2 facilities. My oncologist is in a larger town and I also go to my local clinic. The 1st set was given at the larger facility and the 2nd set was given at my local clinic. In 2 weeks I'll be at my local clinic again!

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  • pajim
    pajim Member Posts: 2,785
    edited October 2015

    OhMyDarlin, who should tell the nurse how to give the injection if not you! I always smile and say "slowly please" and "if you'll give me the syringes I'll warm them up for you". It MY tush! That said I don't worry much about where on the butt they give it.

    I will say they are getting more experienced with these. When I started two+ years ago they didn't give this anywhere near as often as they do now.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    jobur,

    Got my Xgeva in the belly first then two Faslodex in the rear - everything went smoothly and I felt almost no pain. The nurses did them simultaneously and suggested I bend over a chair - I think the shots were a little higher up then what I've heard described from others. Anyway, hoping for little to no SE.

    Amy

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  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2015

    My shots are given "higher up" which is where they're supposed to be given from what I've read and yes WE are in charge of who gets to give them - honestly not everyone is skilled with injections - just two in my clinic and this last time I didn't insist and ended up having pain the day after - something I haven't had in the last 7 months since I insisted on which two nurses I trust - I've been on the shots for almost a year now and suddenly am experiencing bone and muscle pain - everywhere - it's especially bad the first two weeks after the shots - and terrible at night because I stay in one position while sleeping - I am not getting a lot of sleep I can tell you - anyone else? And oh yes, hot flashes - drenching ones - not very often and not at night!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2015

    Had my shots this a.m. All went smoothly and my fave tech cracked me up when I reminded her that last time for some reason the one on the right side had hurt more than usual. Her comeback was, " Well, I don't know why. Maybe I hit a ...(long pause while I anticipated she would say nerve) ... stretch mark?" I didn't even feel it go in this time because we were both laughing so hard.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    Deanna - we need laughs like that as often as possible. Thanks for sharing.

    Amy

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    Amy, Glad to hear all went well. I've heard of the twofer approach (one nurse per cheek) but never personally heard of anyone getting it that way.

    Sandy, I think I'm starting to see a pattern in my se's now that I've been on the Fas/Ibrance combo for 3 months. Definitely have more pain in first 2 weeks after Fas and Xgeva shots. Now into week 3, almost no pain, but soooo tired. Did you just start having the drenching flashes recently? That was my worst se from Fas and I now take a low dose of generic Effexor. Seemed to help a lot. Sorry you are in so much pain. Not sleeping well effects everything else. Do you have scans anytime soon?

    Deanna, now that's a good technique! Keep the patient laughing so hard they don't feel the needle.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    I woke up this morning with a large bruise on one side where Faslodex was given and nothing on the other. Must be technique.

    Amy

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2015

    Sorry, Amy. Did you walk around for awhile right after you had your shots, and continue to massage the areas? That was recommended to me by the tech I like, and it does seem to make a difference. Also, when I had mine yesterday, I purposely didn't lower my pants too much, so that the shots were given quite high, which I think is better than when they're a bit lower. But, wow, I can't imagine why you ended up with a bruise.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2015

    dlb - my right side always is more sensitive than the left - I had a really bad episode with my sciatic nerve on that side years ago (when I gardened all day - Canadian transplanted to the South at the time) - I do the walking thing right after shots and it works.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    I did walk a lot but no massage - I forgot about that. I'll put the massaging on my calendar. Seems that's the only way to remember things these days. The shots were given up high as I know I didn't have to drop my drawers much

    Amy

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  • cling
    cling Member Posts: 333
    edited November 2015

    I drank lots liquid on the day of shots, and it looked terrible on the shot room scale yesterday. I weighed last night and went to bathroom every 2 hours throughout the night. This morning weighed again, the difference is 4.7 lbs! Could water make that much difference in weight? I also get massage the day after shots. It has helped me without any significant pain in the injection sites in the past two years.

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  • lindymarie
    lindymarie Member Posts: 2
    edited November 2015

    glad that I found you gals . I have metastasized twice and I am now stage 4 Last time to colon with resection, lymph nodes positive . I can deal with the injection pain, the joint pain, the hair thinning, the skin changes, but the emotional changes are starting to overhelm me . I was actually three weeks late on my fifth dose and did notice quite an improvement in my overall sense of well-being. Then took the fifth does and a week later a meltdown . At that time it occurred to me that it was a hormonal change . My doc is not on board . I have continued to work throughout all of this in a very responsible position and am a well-controlled person . But am wondering has anyone else experienced this type of reaction to the Faslodex ? I am also continuing to use the letrozole

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2015

    Lindymarie - I'm sorry you're having such a rough time emotionally. Whenever I find myself anxious or tearful, if it doesn't pass in a day, I'll take anti-anxiety meds and generally I'm calmer and feel more positive rather quickly.

    Interesting you are getting Faslodex AND still taking letrozole. Since my progression, I haven't met with my onc as she took a three week vacation, so I assumed Letrozole was out and Faslodex was in, so I tossed em. She did make notes in my chart about starting Faslodex so her colleague made the switch in her absence.

    I see her next week so will ask if I should continue with both.

    I hope you can get the help you need to feel more upbeat soon, but just remember, what you're going through is completely understandable and normal and you have every right to occasional meltdowns.

    I'll be thinking of you.

    Amy

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited November 2015

    Hi Amy

    Just to say that I am on both Faslodex and letrozole also. I am feeling exhausted after my shots last week. The weather has turned wet and windy here so I can't get out for my usual amble by the shore. I'm stuck indoors feeling tired, achey and sleepy. Hate this.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2015

    Aoibheann,

    I may have jumped the gun when I tossed my Femara out - I'll double-check with my onc on Wednesday and see what she says.

    My maiden name is Quinn so with Irish heritage I've always wanted to visit the Emerald Isle. I hope to one day. I am sorry you are tired and achy. Cold rainy days don't help with our overall moods either. I do hope you have a fireplace you can curl up in front of with a cozy blanket and good book to read. Sounds like my cup of tea for dealing with crummy weather.

    Good luck to you. Keep us posted on how you're doing. Hugs -

    Amy

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  • pajim
    pajim Member Posts: 2,785
    edited November 2015

    Lindymarie, I'm so sorry you're having this trouble. Even sorrier that your onc isn't listening to you

    It does seem like an extreme menopausal symptom. And Faslodex will cause extreme menopausal symptoms.

    If you find the emotional swings to be too much, maybe it's time for a switch of treatment. Or possibly some anti-depressants or anti-anxiety meds?

    I take letrozole with Fas as well. The idea is to block two estrogen pathways, causing the tumor extreme estrogen deprivation.

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  • pajim
    pajim Member Posts: 2,785
    edited November 2015

    Do any of you have advice on dry skin? I know this seems like a stupid question, but my entire life I've had oily skin. Even through the first two years of Faslodex/Letrozole.

    Nowadays I notice that the skin on my legs in particular are very dry. And this week I wore a pair of shoes I shouldn't, causing a blister the likes of which I've never seen before. The skin on my heel just split apart (in about 20 minutes -- really!). It's sort of scary.

    I know lotion yes, but what kind? And what's the protocol for putting it on? Every day? After showers? Huh? (Can you tell I've never been a girly girl?)

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  • jobur
    jobur Member Posts: 726
    edited November 2015

    Pam, I swear by Gold Bond Ultimate Healing. I have had dry skin for years and this lotion keeps it at bay. I normally slather up after showers, but any time you feel itchy and dry should be fine. Can't help you with the foot blister. I am not a girly girl either and gave up shoes that hurt long ago.

    Lindymarie, I would think the Fas/letrozole combo would put you into what I think of as super menopause, like no estrogen anywhere. Good for fighting cancer, not good for our emotions. When I was taking anastrazole I felt like a 13 year old girl again emotionally. It got much better for me when I switched to Faslodex, but I also started taking a low dose of generic Effexor about that time. It seems to help with both hot flashes and emotional ups and downs. On the forum I have heard the phrase "better living through chemistry". Maybe a mild antidepressant or antianxiety med would help. Also, oncs are not always the best at admitting to the se's from our tx's. Mine always acts surprised when I tell her about se's bothering me, like she never heard of it before.

    Aoibheann, Hope you are feeling better and back to your ambles on the shore. I'm Irish too and that sounds lovely. Hope you get a little sunshine to cheer you up.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited November 2015

    I use the Gold Bond Ultimate healing as well - it is a godsend, I also use an eye cream but wear it during the day because it's just too greasy when I am sleeping - the skin around my eyes was so dry it was flaking into my eyes and I use a gardener's handcream which you can get in any gift shop - they are usually locally made and they are heavy duty - they are generally very lightly scented too. Yes, my onc tries to pretend that there are no se's especially from Faslodex - sorry there are! That's why I make an appointment each month a few days after my injections so my PCP can help me with whatever. I use a very low dose of anti-anxiety med when necessary.

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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited November 2015

    Shots this morning. Hope you are all doing well!!

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  • 208sandy
    208sandy Member Posts: 2,610
    edited November 2015

    Ohmydarlin - we're "almost" twins - had my shots yesterday.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2015

    Had mine this morning too. So happy to see the nurse warming the serum in the palms of her hands before administering. I also met my onc today - she's not including Femara with Faslodex but will consider Ibrance if Faslodex alone doesn't work. May also need rads to 8.5 cm and 4.3 cm spots on my hips. I'm getting a second opinion first.

    Amy




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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited November 2015

    Wowsers my shots hurt today!! I tried leaning on the exam table rather than laying down. I'll definitely be laying down next month. 208sandy...I've noticed my legs are super dry. Thanks for sharing the tip about Gold Bond. Sounds like we're twinning in more than one way 😊.


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  • Georgie0326
    Georgie0326 Member Posts: 18
    edited November 2015

    Hi - I am in so much pain I can barely walk today. It feels like sciatica on my right side, which I have never had sciatica on the right, only the left. When I get my shots, the nurse uses the pull and pinch method, and it is very painful, burning. I have started to ask for ice packs afterwards so I can use them in the car on the way home. (I have an hour's drive). Know have read it is not good to use ice as the Fulvestrant doesn't get into the muscle? I read the article Tina had posted about the Ztrack method and wondering if that is why I am in pain

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2015

    Please, please, please tell her to stop with the pull and pinch thing. Print out the proper instructions on how to give this shot and make sure that she is trained properly. This shot can certainly be painful, but it should not be as bad as this!

    *susan*

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